Comments on: Sarcoidosis Impacting New Yorkers after 9/11

By: Jacqueline Kelly

Jacqueline Kelly — Sun, 08 Nov 2009 14:47:40 +0000

Hi, I was scanning for any information connecting sarcoidosis and asbestos when I found your articles. I was diagnosed with sarcoidosis over 14 years ago and told I would not get much better. I had chronic low grade plurisy and walking was agony. I was only 28. I tried steroids for 3 wks (prednis) but they did not help. I was prescribed voltarol which I took for a year daily. I gradualy weened myself off voltarol onto bio-selenium and zinc and started to have various natural therapies inc. reflexology and herbalism amongst others. I started gentle exercise and built up my strength riding horses. I discovered this was non aerobic exercise so it was easier on my lungs. Since then i have been working with and exercising race horses, take no medication and dance my socks off jiving every week.

However I do have to work at the balance and have had minor hiccups.

I may have been exposed to asbestos at 7 yrs as my father who brought it home on his clothes from his plumbing job died of asbestosis. I was at home recovering from rheumatic fever after spending 4 months in hospital so I was weak.

My 13 siblings may also have been exposed but perhaps they were stronger. Time will tell.

I believe sarcoidosis may have many causes and triggers. My advice would be get to know your own body and what it responds well to and use any knowledge you can get your hands on to help yourself.

Contact from anyone who thinks I can be of support to them in any way are welcome

By: augoldminer

augoldminer — Mon, 07 Sep 2009 03:08:14 +0000

I still am mix about sarcoidosis being caused by some yet unknown toxin.

I am a ex vol-firefighter/EMT from calif with sarcoidosis and know of other firefighters that have it and none of us were at the WTC.

I believe that sarcoidosis is not caused by a known toxin but by a common bactera fungus or other substance,
Some of the firefighter i know with sarc were wild-lands firefighters and did not do houses or building very often.and very rarely ever went into a burning building.

Its the high stress, long hours and the common materials we encounter that triggers the immune response causing sarcoidosis.

i was lucky in that my sarcoidosis went dormant after i quit working as a vol firefighter. and did not have to start predisone so far

By: Kevin

Kevin — Wed, 17 Dec 2008 22:52:22 +0000

I recently met a friend who had worked in the vicinity of WTC on day of and subsequent to 911 attacks. He advised me that he has been diagnosed with sarcoidosis within pat year or so and has been takingsteroids (prdnisone) on a daily basis since the diagnosis was made. He also advised that he may strat taking some type of chemotherapeutic agent (he did not know name) as an adjunct treatment modality to decrease the need f daily steroids which their inevitable sequelae.

I would appreciate being provided with any information regarding the diagnosis of any non-fire/rescue personnel who worked in vicinity of WTC, how the diagnoses were made and the current state of the art treatment being rendered. I would also appreciate being advised as to any rights for compensation which might be available and the burden required to prove a causal link between the disease and the post-911 exposure.

Many thanks for your assistance.

Kevin O’Reilly